New treatments see blood cancer survival rates up

The formula above is not meant as a math trick.  But it does depict some tricky math for cancer survivors like me.

All that I have to say about this search and this topic is that it is good to be counted among the one in four.  That is, according to this source, one in four NHL (non-Hodgkin’s lymphoma) survivors have a chance of surviving for five years.   Count me at 5.8 years since my stem cell transplant and 7 years since the diagnosis of mantle cell lymphoma (MCL), a potent form of NHL.

Reading this article and seeing this illustration of the three bags of stem cells makes for a personal flashback to the August 2007 SCT procedure at City of Hope.

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When the diagnosis is certain, but the path is unclear

MYELOFIBROSIS : Just learned in the last few days that a close friend has been diagnosed with myelofibrosis, a serious bone marrow disorder that disrupts the body’s normal production of blood cells. The result is extensive scarring in bone marrow, leading to severe anemia, weakness, fatigue, and often, an enlarged spleen and liver.  The news was shocking to hear and a flashback to the time seven years ago when I was diagnosed with MCL (mantle cell lymphoma).

Given that fact that I did not know about myelofibrosis, nor that the disease is a type of chronic leukemia — a cancer that affects the blood-forming tissues in the body, I am on a web search for facts. Myelofibrosis can occur on its own (primary myelofibrosis) or it can occur as a result of another bone marrow disorder (secondary myelofibrosis), according to the Mayo Clinic.

An ‘orphan disease’ is one that has not been adopted by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications to treat or prevent it. An orphan disease may be a rare disease (according to US criteria, a disease that affects fewer than 200,000 people) or a common disease that has been ignored (such as tuberculosis, cholera, typhoid, and malaria) because it is far more prevalent in developing countries than in the developed world.

Needless to say, I have now exchanged multiple emails and made phone calls to potential sources of help and treatment for my friend, Randy W., who is about my same age, far too young to face the possible morbidity and the shortened mortality that I faced seven years ago before my August 2007 stem cell transplant from an unrelated donor.

Yes, my friend is in good care with a primary physician who made the diagnosis, but also, he has found that the physician is limited in knowledge about treatment for the disease.  Hence, I made a call on his behalf to City of Hope to arrange for a consultation that will happen shortly.  Lesson #1 :  Never wait for well-meaning medical systems to grant referrals to specialists, if that can be hastened.  By their nature, doctors study subjects literally to death; you just don’t want that outcome to prematurely become your own.

If interested in this topic further, you may want to read this deeply clinical blogger on the subject:
Perspectives on Hematology, Health Care, and The Profession of Pharmacy
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Human Embryonic Stem Cells Derived by Somatic Cell Nuclear Transfer

Human Embryonic Stem Cells Derived by Somatic Cell Nuclear Transfer }:{ My August 2007 stem cell transplant (SCT) was done with adult cells from an unrelated donor.  While the procedure is fraught with risks, mortality, and morbidity factors for the recipient, an SCT or the BMT (bone marrow) equivalent is virtually harmless to the adult donor.
 }:{  alt@search  }:{  alt@story   }:{ 

Because I was the recipient of life-saving stem cells 5.8 years ago, I am naturally more than a casual observer of the science.  But everyone who seriously follows this story line and these tweets, realizes that society and medicine at large both face certain ethical questions regarding transplants using embryonic cells.  While the adult cells issue is largely resolved, I am not sure that this “breakthrough” cloning of embryonic cells solves the larger ethical issue, but it does bring the science to an important threshold, thanks to the work of:

Shoukhrat Mitalipov is an associate scientist in the Division of Reproductive & Developmental Sciences of ONPRC, Oregon Stem Cell Center and Departments of Obstetrics & Gynecology and Molecular & Medical Genetics, and co-director of the ART/ESC core at the Center. He earned his Ph.D. degree in Developmental & Stem Cell Biology at the Research Center for Medical Genetics in Moscow, Russia. He came to Utah State University in 1995 to conduct his postdoctoral research in stem cell and developmental biology. Dr. Mitalipov moved to the Oregon center in 1998.

In summary, the research by Dr. Mitalipov deals with totipotent and pluripotent stem cells that are important as a unique research tool that allows investigation of the mechanisms regulating early primate development and differentiation. Human stem cells also provide the far-reaching foundation for the field of regenerative medicine and offer hope for the treatment of a wide range of clinical conditions that can be attributed to the loss or malfunction of specific cell types. Translational research in the clinically relevant nonhuman primate model is highly desirable to evaluate the safety, feasibility and efficacy of cell-based therapies. The basic research conducted in the Mitalipov lab provides new insights into the generation, maintenance and developmental potential of primate totipotent and pluripotent stem cells.

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#stemcell : the social current see today

5.8.25* : You would expect my interest in this hashtag to be constant since my August 2007 stem cell transplant, but it has been awhile since I updated my “follow” list in this category. So, today, I finished that update on TWITTER with these results.  }:{ Also see CANSWERIST  * 5 years, 8 months, 25 days since my SCT
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#stemcell : the social current see today

Keeping score is fun with shots like this (golf)

One of my favorite retirement pursuits is playing golf at a neighborhood course about once a week. Coming back from the long-term chemotherapy of 2006-07 and then recovery from the 2007 stem cell transplant has been a challenge physically. I am constantly aware of the loss of muscle tone and strength (not to mention memory cells).  Long drives are not part of my game, but I strive to hit them straight whenever I can and to stay out of the traps and other course obstacles, and that’s not easy on a course like Glen Ivy.  Yet, some days are better than others.

As a high-handicap player, you can expect that I am most elated with an occasional par score in any round, so you can imagine my elation today when I actually scored a birdie (one under par) on hole #12 at Glen Ivy Golf Club in Corona.

My unexpected good fortune came on the 355 yard par 4 dogleg left hole that the course map guidebook admonishes players to off the tee: “avoid the bunkers on the left midway toward the green.”  In order to understand the short narrative of my three shots, see the image on the left where I  mark approximately where my first two shots landed on the way to the green.

Atypical for me, my first shot with my #1 driver traveled around 150 yards to the center of the fairway.  The second shot with my hybrid fairway wood was about equal distance, also down the center just beyond the cart path that crosses the fairway about 75 yards from the pin located in the center of a large green.

The clincher was my third straight good shot in a row (rare for me) with a 7 iron that I managed to loft about 10 yards from the hole. I almost jumped out my shoes when I saw the ball roll the last ten yards into the cup!

This was indeed my shot of the day and perhaps the year.  The rest of the round was actual typical with my final score at an even 100 for the day and my twosome partner, Larry, ended with a 94.  Notable was the fact that other than the birdie hole, my round included identical scores of 50 on the front and the back nine.  The score is encouraging for me because it puts me within only one shot of breaking the magical “100” ceiling on this most difficult 6000-yard course.
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Timekeeping in the SCT zone

If there has been a lesson and, of course, there have been many that came out of the ocurrence of mantle cell lymphoma (MCL) in 2006, it is that time-keeping has a necessary, but continuous presence.

As of this post, we mark 68 months since my successful stem cell transplant.  That’s 5.66 years or 1833 days.  Does that mean we are cured?

Of course, we hope and pray that is the case, but none of my doctors will proclaim a cure.  Never, for the remainer of my life, can we expect that certainty.  Yet, survival is good and the best outcome of all.  What is it they say about not focusing on the destination, but enjoying the journey?

Dee Dee and I along with our friends Larry Fetters and Kathy Wright spent several hours at City of Hope yesterday (May 10) for the 37th annual BMT Reunion with an estimated 5000 participants. Gathered in Duarte were those BMT and SCT survivors like me (since Aug. 22, 2007). Just a few yards away was the Helford Hospital where my transplant was performed.  As the crowds assembled on the hospital’s north lawn, probably about three dozen transplant patients occupied beds waiting for the day they could also celebrate with us.

Below, Dee Dee and I pose with my chief oncologist Dr. Ryotaro Nakamura. Just a fabulous day to share with the celebrating crowd of survivors, their caregivers, friends, and loved ones. }:{  alt@LINK  }:{  This link provides a slide show of our day.


 

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Reading for a Transplanted Life

Now loaded on my Nexus7 KINDLE app is THE HEALING CELL, touted as an easy to read, carefully researched, and clear-eyed view of medicine many decades in the making. Cancer-free stem cell transplant patients like me know this truth about stem cells that are now paying off with treatments that repair damaged hearts, restore sight, kill cancer, cure diabetes, heal burns, and stop the march of such degenerative diseases as Alzheimer’s, multiple sclerosis, Lou Gehrig’s disease, and (in my case) mantle cell lymphoma.

The emotionally and intellectually stimulating stories throughout the book dramatically illustrate that stem cell therapies can change the way we live our lives after being afflicted by a disease or trauma. The book is the result of a unique collaboration between the Vatican’s Pontifical Council for Culture and the Stem for Life Foundation. It includes a special address by former Pope Benedict XVI, urging increased support and awareness for advancements in adult stem cell research.

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Reading for a Transplanted Life